LesMom, I'm sorry but I've forgotten your "real" name.

You guys are awesome! These are such thoughtful, useful and supportive responses. This topic is so hard to deal with too.

I wanted to respond after you posted but my MG has not been nice.

I said in my book that, "I wish I could get a restraining order against my MG because it beats up on me every day." Having a disease like this does feel like you are constantly abused. It hardly ever leaves you alone. Which is why coping skills are so important to surviving every day.

Have you seen a psychologist to discuss how you're feeling? I had great coping skills but I needed more. I'm really grateful I went to see one. When someone's life is "normal," with few challenges, they may not need hardly any coping skills. MG has taken nearly everything I love and love to do, so working on making my life the best it can be has been my top priority lately.

Sure, it helps to do the old "It could be worse," but MG continues to change it's intention daily, so it is often worse. You can't really ignore MG by comparing your life to someone else's. It's not useful for long periods of time.

It does help to be philosophical, in that you can realize who you are - your unique soul - is special no matter what's going on with your body. But that only goes so far some days.

The things that really help me every day are:

Focusing on what I CAN do.
Not beating myself up when I can't.
Making my environment easy and fun to be in.
Listening to music, like when I need to gear up to do dishes
Talking to people (even if it's in an email) who fully accept and support me.
Learning something new.
Doing the things I like to do (writing/designing) before I do those I have to do.
Avoiding the news and other stressful things. I can't change it or do anything about it.
Journaling helps to purge frustration.
Filling your air with a scent you like helps too (aromatherapy).
Eating organic, whole food to keep my immune system as healthy as it can be.
Getting enough sleep, whenever I need it.
Helping others whenever I can.
Going outside, getting fresh air and just soaking nature in.
Looking at web cams from around the world, which takes little effort and is really interesting.

There are so many other things that you can do to create a world that you can be happy in, even when you're not.

And when none of that - and more - doesn't work, I cry or scream or throw a little "soft ball" I have and allow myself to feel whatever the heck I'm feeling.

Drugs do help some people but I don't think any drug would change my intellect enough for me to revel in my MG circumstances.

This is a hard disease. It's unpredictable and relentless. And, yeah, somedays I tell it, as Rach often says, to bugger off. I will never "like" it. But I've come to a place where I can mostly be okay with it. Who in their right mind would really like this stupid disease?!! "Hi, MG, thanks soooo much for coming into my life."

I've had MG my entire life. I sometimes wonder if I was better off not knowing what it was. I only got diagnosed at age 42. Before that, I was always adjusting what I did without knowing why I couldn't do what I wanted to do. But it kept getting worse and I had to know. At least now I know the ways I can work around the disease to have the best life I can.

Just be yourself. Don't let this disease take away what makes you you. And you might be able to find new things to do that could get your mind off of it. I think everyone has something they can do where everything else disappears while they do it. For me it's creativity. I hope you'll figure out the best balance you can to be sort of kind of okay with having MG.


Annie

I almost forgot the most important thing: LOVE.

Yes. And they must STOP doing this! This is the reason why I still have troubles adjusting and coping. I don't want other to know I have MG, because, just look it up: it's as easy as a nosebleed. Even some with MG theirselves tell me, well...MG aint that bad, there's treatment and all, and it isn't like rheumatism, cancer or MS.

They all keep saying this. Even some docs! I've said this many times, but I keep saying it: I have had all (still have) all the above. And you can't compare them! MG is truly my most difficult and dibilitating disease. They can't believe it becauce it isn't lifethreathening like cancer or doesn't create permanent damage.

The best auto immune disease, pfff, that's what they told me indeed. I truly hate it, and it doesn't make me feel "positive" or anything.

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Anyway, lesmom, back to you: you will learn to deal with it. If you make an appointment and at that time it seems like you can't make it, well that's just too bad but no harm done. I think everyone will understand you try your best but sometimes you just have to listen to your body.
Just keep making nice appointments, like christmas shopping, going to a theatre or cinema. You will learn to listen to your body, and exactly what it is you have to do (and have to don't) a few days before that appointment. Maybe you can use a wheelchair?
And you have something to look forward too!

If you feel it's just too much, don't hesitate and call it off. Everyone will understand, and everyone will rather have you feeling good than you feeling awful because you still went. And if they don't understand, it's their problem

Anyway, you have MG, and there is no way you can compare yourself with a healthy person. Even if you seem to be functioning like any other, like your husband sees you, it doesn't mean it doesn't cost you more energy. It doesnt mean you have to lay down before you're tired. But just listen to your body, not to what your mind is saying to you ("I am young so I must be able to do this!")

I don't know if you need professional help or not. Some find it beneficial, others don't. You can try and see where it goes. You only have this diagnosis for a very short while, it's not that weird you have all kinds of emotions!
I was relieved ("Im not crazy"), angry ("Im too young and I had plans"), depressed ("whyyyyyyyyyyyy") and ashamed ("Im not gonna go because I dont want them to see my wheelchair") in the first 4 months never been to a therapist, because that just doesn't work for me.

However, there's one thing that concerns me: you talk about your weightgain and control your eating. Maybe it's an idea to make an appointment with a dietitian?

What is normal anyway? It sounds very boring to me!
I always concidered "normal" a dirty word.